Just another MRI. My 7th, in fact, but who’s counting besides Priority Health and me? This includes my initial MRI 10/29/15, a repeat at U of M, an early post-op MRI in the middle of the night (you can’t get any rest in the hospital), my first follow-up MRI post radiation / chemo, and so on every 9 weeks until my latest August 16, 2016. I have settled into a routine at the Northwestern Radiology department, from the check in, changing into two gowns (because with just one you either sacrifice privacy of the front or backside), being scanned by a handheld metal detector, and then not trying not to fall asleep in the scanner. A short nap would be nice, but I tend to twitch while falling asleep, and do not want my movement to cause artifact.
Once you lie down on table, prior to sliding into the scanner, you cannot miss the pleasant and colorful cover over the ceiling LED lights. Whoever sells these must have a small target of radiologists and dentists. I think the cover is a floral scene at NW, but I’ll need to check for sure next time. And I also get a choice of music genres to be played through my headphones during the scan. These are not exactly “noise cancelling” headphones; you can barely hear the music over the loud imaging sequences. I’ve tried classic rock and pop, but it is like trying to play “Name That Tune” with just hearing a few seconds of the song playing at a time.
My 8/16/16 MRI was a little different. My previous MRI on 6/14/16 showed subtle changes, most likely inflammation. This was just something for “close follow-up” per my doctors. The 8/16/16 MRI showed more prominent changes. You really need to accept ambiguity at times to stomach MRI reports for GBM in the modern era. Radiation, and for some, immunotherapy can mimic progression. Per the Duke University special on 60 minutes, injected polio virus has caused similar confusion. I call it pseudoprogression. There is an appearance of growth, but could actually be the therapies working and beneficial. You just never get “normal” anywhere on the report. You hope for stable or unchanged. If it is true progression, it usually is not subtle: it roars back with a vengeance.
I had not thought about my cancer progressing that much during the summer. I mostly felt fine, and had a nice balance of work, family, and rest. But on that 8/16/16, all the emotions came back. The news from the neurooncologist was not even that damning. She was 70 / 30 sure that this was inflammation, not progression. However, they were going to discuss me at Tumor Board and do an early repeat MRI (#8 if you wish to count along with me). I just wanted to continue on with the current plan of pembro every 3 weeks, temozolimide pulse every 4 – 5 weeks, and mind my own business. I certainly did not want a group of doctors discussing me behind closed doors at Tumor Board.
When they gave me the schedule for my early repeat MRI 9/6/16, reality came back. That is the first day of school for most Michigan schools, including East Grand Rapids Public Schools. I have a 6th grader, 3rd, and 1st. The fourth, Mia, is starting preschool a week later. This is nearly sacred day for those with kids in schools. I love the autumn with the beautiful Michigan weather and energy of a new school year. Instead of that first day, I would be on the road, driving to Chicago before the kids were up, returning after they were back from school. And it would disrupt everybody that would accompany me as well. The likely pseudoprogression lead to real inconvenience. And if I had real progression, the chances of seeing another first day of school would drop significantly. So all the emotions that I held in check during the summer just came out. I hugged my infusion nurse Lilly and started crying in the hallway, out of sight from family. It is nice to be in Chicago, to separate my work life from my providers. I can just let go, and then come back to my office the next day without anybody seeing me like that (although my cardiology Nurse Jane caught a glimpse).
“It’s the first day of school,” I said to Lilly, as if that was the biggest problem.
“Take a few deep breaths. We can change that,” she said.
Oh, that ’s right, these things can be changed. For the first time in a while, I felt helpless with a very scary cancer. I was so used to every 3 weeks in Chicago on Tuesday, a different day or date seemed out of the question.
I didn’t think “Why me?” because I know there is not an answer to that except a vulnerable host (me) with a random series of changes in DNA. I also didn’t think “Why not you?” because it is an equally unanswerable question. Through this illness, I have become much more aware of other people with cancer, especially other GBM patients. There is no rhyme or reason why some people do okay, and others become sicker. It crosses athletes, religious backgrounds, a person’s willingness to fight, special diets (unfortunately, even Craig’s Cinnamax has failed to show superiority to placebo) or just how nice somebody is. We used to joke in residency that mean people do not die in the hospital, but that was probably just recall bias. The malignant cells do not care, and do not play fair. Cancer just sucks.
At Tumor Board a few days after my MRI, my ‘case’ was presented. There have been new guidelines published in interpreting MRIs in this new era that leaves room for inflammatory changes. There was unanimous consensus that my scan represented inflammation from either radiation or immunotherapy.
So, I dropped off my kids this AM at school, and will go for my routine Pembro infusion a day late tomorrow.
Figure: Pure Michigan vacation theme. Upper left, carrying Queen Elizabeth for a bit through a Sleeping Bear Dunes hike. Middle left, a scenic view of the park. Upper right, trying foot golf out with Connor at the Grand Hotel. Bottom left, Allison happy to pose for a picture (see below for a less enthusiastic picture). Bottom right, crossing the straits of Mackinac with Connor.
Figure: First day of school preparation. Allison at her locker the week before school. Middle left, Allison develops a cynical side with first day pictures. Middle right, Allison at Connor at breakfast with Mia waking up later.
Figure: Redoubling my usage of the lucky cup. Coffee in the morning, a nice beer stein at night. Middle, full swing into the Alguire birthday season. Ella and Gen, BFFs, usually share a party. Featured watermelon shark by PCP. Right, insert an inspirational message of your choosing.